I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Restorer on February 24, 2009, 07:19:52 PM

Title: Not doing well
Post by: Restorer on February 24, 2009, 07:19:52 PM
Well. What a week. Last Wednesday, I started having some abdominal discomfort during the day. It felt just like a had eaten something that didn't agree with me downstream. Over the day, it persisted, so I decided to do my last PD exchange before going to bed a little early. I confirmed what I was suspecting - I had a cloudy bag. So I called my PD nurse (and left a message) and headed to the ER, where they kept me overnight and gave me two doses of IV antibiotics and some IV Betalol because my blood pressure and heartrate were high. They also took my cloudy bag and an additional sample from me to culture (turned out to be staph). Over the next couple days the pain went away, and my bags are no longer cloudy, but I'm still using antibiotics in new bags overnight, last night and Friday night.

I don't know how much it's related, but the weekend before I got peritonitis, I developed a bit of a cough and fever. It persisted until this weekend, and then got worse. On Sunday night, I woke up in the middle of the night completely short of breath, feeling like my lungs were constricted. It felt like I had way too much dialysate in me, so I drained it out and that helped, at least while I was sitting up. I tried to go back to sleep, but found myself awake and short of breath again an hour later, with bad lung crackles when I exhaled. I couldn't sleep the rest of the night because the crackles made me cough badly, and they were terrible when I wasn't sitting straight up. The same thing recurred last night.

I will be seeing my doctor on Friday. I hope I can last until then.
Title: Re: Not doing well
Post by: G-Ma on February 24, 2009, 07:37:10 PM
Sounds like a call to the Dr and ER visit is needed.  I hope you feel better soon.     :grouphug;
Title: Re: Not doing well
Post by: peleroja on February 24, 2009, 07:39:03 PM
Sorry this happened to you.  Hope you're soon in the pink!
Title: Re: Not doing well
Post by: Bajanne on February 24, 2009, 09:21:12 PM
Please take care of yourself.  This really sounds like you need ER to me.  Let us know how things go.
Title: Re: Not doing well
Post by: Joe Paul on February 24, 2009, 11:34:56 PM
I hope you get sorted out soon, good luck  :thumbup;
Title: Re: Not doing well
Post by: twirl on February 25, 2009, 03:24:06 AM
hope you are better
sorry you are feeling crappy
Title: Re: Not doing well
Post by: drinkboy on February 25, 2009, 06:43:03 AM
Hope you are doing better today.  Don't forget to let us know how things are going
Title: Re: Not doing well
Post by: paul.karen on February 25, 2009, 06:52:52 AM
Hope you feel better soon.

It is kinda sad in my opinion that your DOCTOR wont see you sooner.
But what do i know.

Needless i hope they get you situated soon.
Title: Re: Not doing well
Post by: kellyt on February 25, 2009, 07:28:08 AM
 :cuddle;   Take care of yourself.  Is sounds like you're on top of things, though.  Sorry you're having to go through this.
Title: Re: Not doing well
Post by: Tinah1968 on February 25, 2009, 09:53:26 AM
Sorry your having such a hard time I hope you get to feeling better soon.  :grouphug;
Title: Re: Not doing well
Post by: Rerun on February 25, 2009, 10:54:10 AM
Hang in there! 

                                    :cuddle;
Title: Re: Not doing well
Post by: Lucinda on February 25, 2009, 11:30:45 AM
I don't think I would wait until Friday.  I think another trip to the ER would be advisable.  I hope you are feeling better soon. x
Title: Re: Not doing well
Post by: Restorer on February 25, 2009, 04:25:26 PM
I called my PD nurse again this morning after another night of no sleep, and she managed to get me seen at noon today at the dialysis clinic. I have absent lower lung sounds, and my blood pressure is still very high. My doctor upped my blood pressure med dose again, and directed me to be vigilant and use 4.25% fluid to try to pull some fluid off my lungs. He wants me to call if I'm not starting to get any better tomorrow.

My problem is so bad, though, that I just can't cope by myself. I can hardly get to the bathroom without having to rest before coming back (and getting there, just around the corner, makes me sweat). My shortness of breath is so bad right now. So I've called in help - I'm going to see if my family can help me out, bring me back home for a few days, take care of me.
Title: Re: Not doing well
Post by: kitkatz on February 25, 2009, 05:33:23 PM
A good idea to have family come and take care of you. Hope you feel better soon.
Title: Re: Not doing well
Post by: Bajanne on February 26, 2009, 12:48:42 AM
You do need family right now.  Please let us know how you are doing. :cuddle;
Title: Re: Not doing well
Post by: Joe Paul on February 26, 2009, 01:06:30 AM
I hope the 4.25% helps you. When I was doing PD, I did get overloaded and asked if I could do a session of hemo to help pull some fluid. Is that an option for you?
Title: Re: Not doing well
Post by: deafman on February 26, 2009, 03:39:27 AM
Hopefully you will feel better soon.

 :2thumbsup; :2thumbsup;
Title: Re: Not doing well
Post by: paddbear0000 on February 26, 2009, 06:58:38 PM
I hope you are feeling better soon!  :grouphug;
Title: Re: Not doing well
Post by: pelagia on February 26, 2009, 07:28:52 PM
Your condition sounds serious to me.  I hope you are now with someone who is keeping a watchful eye over you.  :cuddle;
Title: Re: Not doing well
Post by: st789 on February 26, 2009, 07:46:24 PM
Wish you a recovery soon!
Title: Re: Not doing well
Post by: TeenHatesDialysis on February 26, 2009, 08:04:54 PM
I am sending all of my positive vibes to you.  :cuddle; I am glad that you have some family to look after you. Feel better soon.
Title: Re: Not doing well
Post by: G-Ma on February 27, 2009, 10:54:13 PM
 :grouphug;
Title: Re: Not doing well
Post by: Restorer on March 02, 2009, 05:42:26 PM
I saw my doctor again today, and got him to order a chest x-ray. It looks like I have pneumonia. I will be seeing another doctor, a pulmonary specialist, tomorrow afternoon.
Title: Re: Not doing well
Post by: pelagia on March 02, 2009, 06:02:53 PM
Hope they get this cleared up for you.
Title: Re: Not doing well
Post by: paul.karen on March 03, 2009, 06:33:42 AM
Thx for checking back in.
Hoping they get you sorted fast.
Title: Re: Not doing well
Post by: drinkboy on March 03, 2009, 09:22:00 AM
Sorry to hear about the pneumonia, but at least they figured out what the problem is and hopefully they will get it corrected quickly.  Thanks for updating us.

Title: Re: Not doing well
Post by: paddbear0000 on March 04, 2009, 04:39:29 PM
I hope you are feeling better by this point (or at least getting some treatment). I'm so glad I got a pneumonia shot this year! Please update us on how you are doing!!
Title: Re: Not doing well
Post by: Restorer on April 30, 2009, 04:57:04 PM
Well, I never replied to this to finish it up.

Turns out it wasn't really pneumonia. The peritonitis that I had threw off toxins that caused the capillaries in my lungs to be more permeable to fluid. My CAPD has never been truly sufficient, and I'm a fast transporter, so I was always fluid overloaded. That fluid found its way into my lungs and stuck around.

In March I finally got on the cycler, and with the much shorter dwells, I finally stopped reabsorbing fluid and I started ultrafiltrating a lot. One of the first nights I was on the cycler, it took off 5 pounds of water. It really helped, and within a few days I was no longer puffy everywhere, and I didn't feel like the marshmallow man anymore, and my cough went away.

That was great, until recently. Two weeks ago, the peritonitis came back with a vengeance. I woke up at 2:30am during my cycling with abdominal pain, more diffuse and more intense than the previous case of peritonitis. With some Tylenol, I stuck it out until morning, then went into the ER and got it treated. They gave me intraperitoneal vancomycin, and a prescription for oral Cipro.

Then yesterday. It came back again at about noon. The pain was mild and tolerable, but when it didn't go away after a couple hours, my plan was to call my doctor for more antibiotics. Unfortunately, I didn't get the chance. That night I hooked up to the cycler, and the first cycle was torture. I pretty much bypassed the second exchange and aborted the treatment, and went in again to the ER. This time the pain was very much unbearable - the worst pain I'd ever felt. It seemed like it took forever to finish all the paperwork and triage, then I finally got a bed, and it took another 20 minutes to take blood samples and get ready to give me some pain medication.

But they did eventually give me enough Dilaudid to fix me up, and from that point I was much more comfortable. But it was still another night in the hospital, and that's not something I like. They gave me IV gentamycin and peritoneal vancomycin, and took a chest X-ray and a urine sample, then finally sent me home in the morning. I've spent most of the day sleeping (or trying to sleep).

This is getting ridiculous. I'm going to try everything I can to fight this bug aggressively. I just hope my doctor can keep up.
Title: Re: Not doing well
Post by: David13 on April 30, 2009, 05:05:18 PM
Sorry to hear about all of the difficulties.

Make sure they are drawing a culture of your fluid so that they can prescribe the most effective antibiotic to treat the peritonitis. 

Keep us updated. 
Title: Re: Not doing well
Post by: jbeany on April 30, 2009, 06:05:36 PM
 :grouphug;  Hope they get it fixed soon!
Title: Re: Not doing well
Post by: Restorer on April 30, 2009, 06:45:56 PM
Make sure they are drawing a culture of your fluid so that they can prescribe the most effective antibiotic to treat the peritonitis.   
Yup, each time I've been in, they've taken a sample to test, as well as blood cultures just to be sure. It always turned out to be staph. My PD nurse even took a sample a few weeks after my first infection, which showed that there was still some staph bug hanging around.
Title: Re: Not doing well
Post by: David13 on April 30, 2009, 06:50:10 PM
Yup, each time I've been in, they've taken a sample to test, as well as blood cultures just to be sure. It always turned out to be staph. My PD nurse even took a sample a few weeks after my first infection, which showed that there was still some staph bug hanging around.

Have you been able to figure out why it keeps coming back?  Is it that they aren't able to completely get rid of it with the antibiotics?  Maybe they need to prescribe them for a longer period of time?

Or is there possibly a source of contamination that needs to be tracked down? 
Title: Re: Not doing well
Post by: paddbear0000 on April 30, 2009, 10:20:53 PM
I'm sorry to hear this. I hope you get this kicked soon!   :grouphug;
Title: Re: Not doing well
Post by: Brightsky69 on May 01, 2009, 05:44:01 AM
I hope you get better soon. What a ride!
Title: Re: Not doing well
Post by: Restorer on May 03, 2009, 02:28:49 AM
I don't know why it keeps coming back. I do everything by the book, and my PD nurse has praised my technique, so I don't think I could be contaminating myself. I'm hoping there's nothing sticking around on the catheter that would cause it have to come out to fix this.

On top of all that, now I'm not draining properly. My bags are continuously cloudy and fibrinous, so I'm suspecting that either there's some fibrin blocking the catheter somehow, or it's gotten tangled up in omentum somewhere. Either way, I'm consistently draining less than I put in, and my fluid weight is going up again and I'm starting to get some of those lung symptoms back. When I go in on Monday, I'll be asking for some heparin with my antibiotic dose.
Title: Re: Not doing well
Post by: andykinney on May 03, 2009, 05:07:15 PM
It sounds like the original infection never really went away!  :(    Maybe the course of antibiotics should be longer in order to kill this bug completely. 

I hope they can get this under control and you start to feel better soon.  Good luck!   :cuddle;